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Finally got diagnosed, now what?

Hi, my name is Kasey, I am 37 and after about 10 years of going back and fourth to Dr after Dr I finally got one that walked into the room, took one look at my face and said, "have you ever been tested for Lupus?". After going over medical history and spending literally 3 hours one on one time with her, she ordered blood work, and gave me the news.

So now atleast I have an explanation as to why I just can't seem to get the energy to do the laundry, or why I have to take naps 3 hours after getting out of bed.

My knees are totally shot, crunch crunch is all they say, I have lower back problems with a herinated disk, and of course depression from years of not knowing what the heck was wrong with me.

So now I guess I am wondering how the heck do you deal with this? I mean, I have a full time job, and ususally by 10:00 in the morning I am spent. I go thru the day like a zombie. All I can think about is getting home and laying on the couch for a bit before I have to get up and make dinner, and feed the dog and the cat, and try and atleast get a load of laundry put in the washer. I also have 2 kids that are active and always have to go somewhere to do something. I feel like I never stop. I survive off of cat naps. Then at night, when I can finally lay down at about midnight I can't sleep. My muscles hurt, my back hurts, my knees hurt, and can't stop thinking about what I have to do tomorrow.

Right now I am on Naproxin, Spireva, and Singulair. I also have chronic lung problems. Oh, and lexapro for the depression / anxiety. I have another appointment next week to discuss other med options.

I guess my main question is, how the heck do you cope with all this. I can't afford not to work. I have been told applying for disability is a joke, and to add another layer, my husband travels constantly with the military and is not much help with any of this.

How do we cope...with medicine, with family and friends emotional support, self care..

After your next week maybe they will prescribed Plaquenil to help with the fatigue, the rash and joint pain. Once you get your lack of sleep under control that will help with the pain and fatigue also. They may prescribe a sleep-aid or a muscle relaxer...everyone's' prescribed regime is individualized and can change form month to month...

Plaquenil is a good drug, can take several months to take full effect. I was fortunate mine was about one month. I suspect they prescribed the Naproxen for inflammation pain, eh? Plaquenil is also an anti-inflammatory and easier on the stomach.

Me, currently, I do Plaquenil, Lortab and Lunesta...and for the stomach Protonix...

Lexapro can cause sleepless nights...maybe when you get your symptoms under control you can forgo the Lexapro under doctors supervision of course. Pain, sleepless nights, stress and as you mentioned the unknown of what was wrong can cause depression and anxiety. I have been on several medicines to treat both those symptoms. Today, I dose with none for those.

Does the Sprivia help with your lungs, do you have bronchitis, allergies with Singulair or for asthma? Lupus does have lung involvemen, such as Pleuritis, inflammation of the sac around the lung, Pneumonitis... inflammation of the lung and Pulmonary embolden... blood clots in the lung.

Hi and thanks. I dont' think they know for sure what is wrong with my lungs yet. I have developed in the last 5 years or so what I thought was allergies, and about twice a year I get upper respitory infections that seem to always lead to pneumonia. The Dr put me on the Singulair and Spireva to help breathe and to hopefully clear my lungs up. However, I havent noticed a differance at all with any of it, as a matter of fact I could swear it has made the chest congestion worse. I figured I would talk to the Dr about that next week.

I really just need to figure what all to ask the Dr when I go. And yeah the naproxan is for the joints and swelling.

Hopefully I can get this all under some kind of control. And yes, I hope that sleep will help. It is coming up on the weekend, which is when I usually get to catch up. I just really need to figure out how to work. It has gotten worse lately. Really. I mean I have to be there at 730, which requires me to be up 545 to get the kids ready and get out the house and all, but by 1030 I just want to come back home and crawl back into bed. Hopefully the meds will help with that huh? I don't know what I am gonna do, but I do know that I can't keep going like this. Maybe I will talk with my husband and we can figure out how long it will take for us to get to a place where I can quit work. Who knows. All I know is the kids and the animals and the house work take about all I have got, and right now, I can tell you the housework is taking a back seat.

Weekend is almost here, hooray, eh? I hope you are able to find rest, z-z-zz- and self care...

I would ask your doctor about the medicines I listed above..especially Plaquenil.

Ask if you are in flare and can it be controlled by a tapered dosed of steroids, Prednisone is one. Works on the joint pain immediately.

I would ask her what exercise regime she can recommend..probably walking. Can you find a place to swim?

A list of foods to avoid....

I would ask to reevaluate your lung issues to see if it is Lupus involvement and if it indeed is just allergies. Lupus does cause inflammation in the lung, pneumonitis.

I would asked her to address your sleep issues, and maybe test you for Fibromyalgia. Maybe participate in a sleep study...

I would ask for a referral to an Orthopedics doctor for your knee, since it is shot. Have you ever dose with glucosamine in combination with chondroitin? It is believe it helps with the cartilage in the knee...the crunch. I have the crunch which is from my knee cap..it is off it's track..

I would ask for a referral to see a neurosurgeon so he can recommend Physical Therapy to build your muscles in your back and stomach to help alleviate the pain from your herniated disk. I am assuming you do not want surgery nor is a candidate for it? Have you tried cortisone shots? I've had two lower back surgeries and one cervical spine..neck.

Maybe when all this issues get resolve, at least to a manageable level work will be easier and caring for your family. Many of us with Lupus work, full time, part-time or are on disability. Me, I do not work nor am on any assistance.

We find ways to modify our lifestyles, many times unreluctentally, but we adapt and change. Being open to changes makes it more palatable, easier....read about, see how other people made changes, even how to do housework....their budget....how they won disability from the first application, hire a lawyer...

Getting connected with you spirit can help...Having Lupus we become so out of balance, mind, spirit and body. One affected can affect the other two. Work on one, and it too can affect the two in feeling better. It is a balancing act...

Hi Kasey!
I just found this website yesterday and have been reading through the forums. I read your message and could relate to what you had to say.
Not much fun being bounced from Dr to Dr. It took about 5 yrs to diagnose my Lupus. I went for brain scans, blood tests, bone scans- the whole gamut. MS, brain tumour-I was tested for everything...some I still have no idea what these diseases are. Names longer than your arm!
When I finally saw my first Rhemy, I prayed that Lupus was not what I had. I thought it was cancer, no one knew much about it 15 years ago.
I heard the diagnosis, the doctor mentioned survival rates, and something about having a baby possibly needing a pacemaker. That is all I heard, I blocked out everything else.
I still find it hard to admit that I have this disease.

You do have a busy life-no wonder you are exhausted. It would be tiring for a person who does not have Lupus. You are a very strong woman.
Is it possible to delegate some small jobs to your children, maybe feeding your pets (if your children are old enough) or helping with laundry?
I too was so tired and worn out when I was finally diagnosed.
(I felt like an old dish-rag-probably looked it too)
I was put on Plaquenil, the first day I forgot to take it, the 2nd day I took 2 together! I was in tears. I was a total mess. Couldn't handle even taking pills properly.
I still work full-time. Some days are brutal, but I just try to concentrate on one job at a time-multi-tasking is now longer something that I can handle.
I do what absolutely must be done and if I can do that then I am satisfied.
Best Wishes-I hope that you will be feeling better soon!

Hi Kasey,
Welcome to the forum. I read your post here and your history reads a lot like mine. I was diagnosed at the age of 36. I will be 50 in December. I am wondering why your doctor did not put you on Plaquenil? Plaquenil is one of the top of the line drugs for Lupus. It can take up to 5 months to get fully kicked in and working, but it helps a lot with the pain and slows down the progression of the disease and it helps with the fatigue. I take Imuran for the lung isssues and skin issues that I have with the Lupus. I also take Clinoril (Sulindac) NSAID for the inflammation. I think you could also mention to the doctor to see if she can put you on Tramadol for the pain in your back and knees. Just some thoughts. Welcome to the forum.

Hugs,
Kathy

Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Hi Kasey,
Welcome. I was also recently diagnosed with lupus and also fibromyalgia. I'm also on Plaquenil, I take Cymbalta for the fibro and depression and Flexeril and Relafen for the pain/ inflammation. I also suffer from brain fog which I'm still going to the doctor for. Just last week my back went out on me. Its so interesting to see how similar our stories are to one another's. Again welcome and good luck with your treatment.